My father showed signs of forgetfulness in the first instance and he did not seem to hear properly. A diagnosis was not immediately given to my father but the first signs were not evident to me first of all as I had never come across anything like this. Gradually the forgetfulness and other things became more evident and my father had gone to see his GP – the GP diagnosed him with Alzheimers and he was referred to the hospital ‘s Memory Clinic. Things had been going on for some time and the first drug he was put on was Aricept. It was described as some kind of a wonder drug but as time went on, my father did not respond so well to this and was taken off this drug. My father was an active person – he was always working in the garden shed and even though he worked six days a week, his time off from work was never idle. My father was Polish and came over to the UK after the War.
I fought to get care in place for my father who could not seem to manage in his own property but moved in with me and at the time I had two young children.
It still sticks in my mind someone saying to me “he will take over your life”. My father was the kind of person who could not sit there doing nothing as he had always led an active life and had made it known to me that he would not be happy in a home. I took these comments very seriously and went out of my way to get some care in place by way of Day Centres and in the morning Home Care – I was working part time at the time and bringing up two young children. First of all the Day Centre which was opposite where I worked took him for a few days but then I had to fight to get more care in place as my father had a tendency to go out walking and get on buses for long rides. Sometimes my father would be brought home by Police and he was known to them as being a vulnerable adult. My father was not so happy having been used to a home of his own living in my house with two young children so a flat on ground floor with a little patio garden was purchased for him and it had a warden there. My father also had an alarm which he frequently pulled to an emergency response unit and one day I was with my younger daughter who was having maths tuition when I got a disturbing call. “Your father has been in touch – he claims his flat has been ransacked and everything is in a mess. I suggest you call the police and get round there”. I told them that my father had been diagnosed by this time as having Alzheimers and that it was possible there was nothing to worry about but I would check it out. As soon as I could, I drove over – it only took about 10 minutes from my house to do this. When I got there my father was distressed and talking about the mess of his flat and that he had been burgled but everything was in place and tidy in the flat and I realised that this along with other disturbing signs was an increasing sign of his decline. My father could no longer be trusted to pick up my younger daughter from primary school and I worked in the afternoons just up the road but by this time she was old enough to make her own way to and from school a short distance away and my father used to go round as he saw it his duty to look after the children but the tables had turned – it was the children looking after him especially my younger daughter who used to get something ready for her Grandad to eat before I got home from work. My younger daughter also knew that my father would seem to carry a lot of money and it turned out he would go to the Post Office and collect his pension more than once a week. He had a book and was well known to everyone there but having lost what appeared to be a lot of money, I arranged sadly for his money to be paid in to his bank account. He had also lost a very nice watch and other things and I had by this time the keys to his flat as you could not just replace these keys being keys that had to be specially ordered for security. I did not like having to take over things for my father in such a way and although when he was in his right frame of mind he had given me consent by way of Power of Attorney to deal with whatever needed to be dealt with the thing he took most hard was not having the pension book. He reported me to the Police and the Police got in touch and asked if I needed assistance. I went down to the Police Station to explain my position. I tried to explain to m y father – it was of course impossible and I complained at the Post Office because of them allowing more than one withdrawal a week from the book leading to loss of money. So I had to control that and pay the bills, make sure my father had food in as he would buy 6 packets of butter and loads of cooking oil and things that were just not right at all but he never stopped caring for the children and like I say my youngest who was at primary school recognised that her granddad needed help and it was for half an hour each evening that the children would have to return straight home from school as I finished work around 5.30 – 6pm and this was in order that the Day Centre could bring my father round by transport.
It then got to the stage that my father who by this time had every day at Day Centre/transport arranged to take him to and from his home and at weekends I would have him round so care had been increased substantially and I realised that it was not safe for my father to make his own way round to my house as there was a busy main road to cross. The routine worked well for quite some time that my father would be brought back to his flat and stay there and then I would go round and help him get ready for bed and make sure he had something to eat. Every single day there was something I needed to do to help my father.
The hospital had warned me that taking him off Aricept I would see within a month or so extreme decline and this was so true. Suddenly my father who was once so active became disabled and needed a walking stick. Before going to work I would be taking him to the hospital for appointments or his doctor and got a walking stick in place, later a zimmer frame. Everything was falling on me including nursing care and I would sometimes have to stay round there. It was suggested many times I just put my father into a care home but I could not do this as it would have been against his wish and the flat was quite suitable. It was thanks to the Direct Payments Scheme that eventually my father was assessed as needing 24 hr care – well I managed to get such care. A typical day would be:
Up around 7.30 am – Home care services would turn up dressing, washing and providing breakfast.
Transport would collect my father around 8.30 – 9 pm to take him to the day Centre where he would remain until 3.00-3.30pm.
A wonderful organisation and charity called Crossroads would come and sit with my father getting him tea and assisting him for a couple of hours every day Mon – Friday.
At 6pm the Polish carer appointed through Direct Payments would turn up and provide dinner and give the “medication” and help my father into bed. This person slept on a settee bed in my father’s lounge of his one bedroom warden controlled flat.
Here is the “Medication” list of my father:
That is quite a list for an elderly person who was nearly 90 years old and now having researched these chemicals I am disgusted by this list. I knew nothing about any of these drugs before but one of the effects was that my father who was once quiet and placid became the opposite and could be abusive to staff and lash out.
I soon found there was complete lack of understanding with some members of staff. The care was working with the regular carers and my father was used to them but did not like it when several members of staff would say “crowd him” at the Day Centre. Some staff coped better than others but some would complain about my father’s behaviour and lacked complete understanding. At the hospital after my father had suffered a heart attack, my father being a very strong person recovered from this well and the hospital wanted to discharge him immediately but I needed a day or so to get all the services up and running but never should such a conversation have taken place at the bedside with a nurse approaching me as it would seem that my father could understand every single word being said and obviously was not happy being confined to bed in hospital but I will never forget the recognition of his understanding and seeing tears in his eyes. It is wrong of some professionals to assume that someone even in the later stages of Alzheimers cannot understand what is being said around them.
There was many hospital admissions for my father and I used to struggle to get him in my car which was a people carrier as my father was wheelchair bound and on Saturdays I took him to a wonderful centre run by Age Concern. I could not do much at the weekends as I had to be there to pick up my father and bring him home and wait for the carers who I had employed by way of direct payments to turn up. Even going on holiday was impossible as respite was arranged but on one occasion my father had climbed a wall and gone missing – he had walked for miles in his slippers back to his old home crossing major roads in doing so. The woman who was now living in his former home was a nurse and tried to take him home but each time he would direct her back to his former home.
Looking after my father for ten years or so meant sacrifices had to be made and time was one of them – as he declined, it became more distressing to watch and I had to spend more time with him but I was not going to give up – it was what he would have wanted to stay in his own home.
I would still find time to help my daughters with homework – the eldest by this time was studying for exams. Elizabeth did not seem to get on with one particular subject – IT and was playing truant from school. She did not seem happy – her best friend had moved to another area but then I was relieved as she seemed to make other friends and always knew what she wanted to be – a chef. I paid for private lessons for the IT and hoped that would be the answer. I felt that the main problem was my father and my younger daughter who would come home from school with her jacked covered in chalk and her face scratched and refused to talk about it but eventually I got to hear and went up to the school to complain. It got to the stage where my youngest refused to go to school and no longer wanted to live any more and this got her referred to the doctor and hospital. The hospital sectioned my younger daughter and diagnosed her with Schizophrenia. She was sectioned for 2 weeks and I had to arrange emergency respite for my father at short notice as I could not cope with them both. When I heard she had been prescribed Rispiridone like my father had first of all been put on I was horrified and complained. I did not want her to be on these drugs and I noticed she had suddenly ballooned in weight. My daughter would be called “fatty/psycho and mental” in the street and I was extremely concerned as this drug they had put her on seemed to make her even more anxious and restless. It did not work at all but she was only on 1mg. I got dreadfully criticised when I listened to my daughter about her not wishing to take this chemical and the team of course were in favour of continuing this. She got referred to Gt Ormond St but I started to look at private schools as I felt this was the answer and I used all m y savings to pay for three years of private education which has been the making of my daughter.
Getting back to my father, I continued to struggle but I am not the kind of person to ever give up. I managed to focus my mind on other things too and I had plenty to focus my mind on what with certain terrible incidents that had happened relating to my younger daughter but all along I thought Elizabeth was doing OK – she had been chosen to go to Finland to work as a chef. I had no worries about Elizabeth then and never could have envisaged what has since happened.
Anyway my father sadly died in hospital several years ago after a hip operation at the age of 90.
It is very hard looking after someone with Alzheimers and watching them decline and I would praise Crossroads, Age Concern and everyone including two very good social workers who went out of their way to help my father.
It is because of the good social workers under the Adults Division that I tried to get my daughter Elizabeth transferred there instead. Of course this was refused.
The best thing that helped me was having direct payments for my father – if only just a little bit of this could have been provided for Elizabeth – in front of the EMU group Elizabeth showed lack of understand regarding direct payments but she was never one to ask for anything. Sadly if you do not ask you do not get and that lead to unfairness – for instance if clear instructions are not given for a trial then nothing is done. If someone cannot pick up the phone and ask they go without. There are people stuck on never ending sections that have become institutionalised this way when they are no risk to society but if someone has not got the strength to go through with a Tribunal and appointing and dealing with solicitors and also if a team try to persuade someone otherwise and influence them in their decision then a patient is not being treated fairly at all. A team have nothing to lose by keeping someone in their establishment for years raking in lots of money – this is the difference – with my father social workers helped tremendously and all I had to do was just keep the records of payments and even if someone cannot do this there is help and support. Whoever thought of Direct Payments is brilliant but as for Personalisation this is not working under MH as when I heard nothing had been provided after 6 months I stepped in to arrange hypnotherapy – I could have found out the answers in just 1 hour as to what my daughter wanted and then the team could have just provided. This did not go down well at all but I had witnesses in terms of friends who accompanied Elizabeth and it was like a miracle to see my daughter temporarily cured and this is why I cannot understand why on earth this is not included in NICE guidelines as it worked and what is more my daughter asked to go again. Why is it like a post code lottery when this is provided by SOME NHS authorities.